March is National Developmental Disabilities Awareness month, a month to raise awareness about the inclusion of people with intellectual and/or developmental disabilities (IDD) in all facets of community life and celebrate their achievements. It also gives us the opportunity to think about the barriers that those with IDD still face, and what we can do to help.
According to the Centers for Disease Control and Prevention (CDC), “Developmental disabilities are a group of conditions due to an impairment in physical, learning, language, or behavior areas. These conditions begin during the developmental period, may impact day-to-day functioning, and usually last throughout a person’s lifetime.”
In addition, the CDC states that “developmental disabilities occur among all racial, ethnic, and socioeconomic groups. Recent estimates in the United States show that about one in six, or about 17%, of children aged 3 through 17 years have one or more developmental disabilities, such as: ADHD, autism spectrum disorder, cerebral palsy, hearing loss, intellectual and learning disabilities, vision impairment, and other developmental delays.”
Less than 60 years ago, individuals with IDD were excluded from many parts of public and private life, including community spaces and most schools. That changed when President John F. Kennedy signed the law now known as the Developmental Disabilities Assistance and Bill of Rights Act (DD Act). Since the DD Act was introduced, the vision of what it means to live with a disability has greatly changed. Today those with IDD exert control and choice over their own lives, live independently, are employed, and fully participate in and contribute to their communities. Quality support services and programs aid in this, giving those with IDD the opportunity to achieve their full potential.
Rein Kukk, a gentleman served by Allies, Inc. for the last 20 years, is an excellent example of how support services, combined with a strong will, courageous spirit, and a deep desire to be an active and productive member of the community can make a huge difference in the life of someone living with a developmental disability.
Rein, originally a resident of Ocean County, came to Allies in 2000 when his mother’s health began to decline. Rein said, “I decided to apply to the New Jersey Division of Developmental Disabilities (DDD). If my mom wasn’t well, I didn’t want to wind up in a boarding house. So, I did the paperwork with DDD, did the interview, and they connected me with Allies.”
Allies assisted Rein in obtaining housing in a supervised apartment. He was also eligible to participate in Supported Employment Services through the Division of Vocational Rehabilitation (DVR). These services help an individual obtain and maintain an individual job in competitive or customized employment, or self-employment, in an integrated setting.
As a first step, Allies conducted a job skills assessment to review Rein’s skillset. He was then assigned a job coach. Rein quickly became fully independent in his job, and the coach faded from the scene. Darren W. Garansi, Senior Vice President of Continuous Quality Improvement at Allies, and a former follow-along job coach of Rein’s, shared more. “During Job Development, a job coach works with an individual to identify the type of work they are interested in doing, what types of jobs would match their skills, and then the job coach works directly with the individual to find them a job,” said Darren.
After this phase, “Intensive Supports” or job coaching helps teach the individual to become independent in their job. The final phase of the process is a “Follow Along”, with the job coach checking in on the individual for about two hours a month to see if the person is maintaining their job independently, or if they need some additional support. “During the Follow Along stage, a job coach may also connect directly with the individual’s employer, to see if he or she can help facilitate better communication between an individual and their supervisor and coworkers; or help smooth over any issues that may arise,” said Darren.
After trying a few different jobs, Rein found a perfect fit at Wawa, where he has worked for over 15 years as a customer service associate. He started at the Brick location, and was later transferred to Hamilton, splitting hours at Wawa stores on Route 33 and Route 130.
Rein Kukk (on left), a Wawa customer service associate, with Carol Healy, General Manager, at Wawa on Rt. 33 in Hamilton, NJ.
Rein proudly remarked, “I received an award for holding a job at Wawa for the longest time. I find it really motivating to be there. I always do the best I can do. I like making my own money. I like helping people and keeping busy, and I’m glad I’m not sitting in the house. The people are really friendly too.”
Carol Healy, a General Manager at one of the Hamilton Wawas, fondly recalls her first experience with Rein. “Five years ago, before the new store opened in Hamilton, Rein decided that he wanted to work here. He started calling me every day for six weeks to ensure we’d transfer him.”
Carol also commented on Rein’s strong work ethic and the contributions that he makes in his job. “Rein is extremely dedicated to his job and is very reliable. He rides a bike, and will ride in rain, sleet and snow to get to work,” said Carol. Some of Rein’s responsibilities include filling the coolers, checking codes, making sure everything is stocked and full for the customers, and notifying staff if products are running out. He’ll also break down cardboard and take out trash. “Rein takes such pride and ownership in what he does,” said Carol. “He’s so dedicated that he will get upset if he has to miss work.”
Stocking coolers is one of Rein Kukk’s many responsibilities at Wawa.
Today Rein continues to be fully independent with his job, but he still likes to touch base with Darren each month to talk. He’s also moved from Ocean County to an apartment in Project Freedom in Robbinsville that he shares with one roommate. He initiated the move to the barrier-free apartment complex after his mother passed on. “I felt it was time for me to move on, because there was no family left for me in Ocean County. So, I decided to move up to Project Freedom to be closer to my brother and sister.” Rein said he really likes the apartment – it’s quiet, comfortable and he and his roommate “do their own thing.”
When Rein is not working, he enjoys watching TV, playing video games and really likes pinball. For his 50th birthday Allies staff took him to the Silverball Museum Arcade in Asbury Park – a retro pinball and video arcade. Pre-COVID Rein also enjoyed going to church, and taking part in Allies’ holiday parties, fashion show, and other recreational events. He’s also taken trips to Washington, D.C. and Virginia, and likes to travel independently via the train and bus.
When asked what else he wants people to know about him, Rein quickly answered. “I’m proud I can speak up for myself and advocate for myself; and tell people how I feel and where I’m coming from. I’m proud that I’m capable of holding a job because that’s important. If it wasn’t for Allies, I would have been in a different boat,” said Rein. He added, “I may not have had a comfortable home. Finding a job would have been extra hard, people may not have hired me. But Allies helped me develop the skills to help me advance, have a good home and hold a job.”
Darren and other Allies staff that have had the pleasure to work with Rein are very proud of him and his success. Darren remarked, “A main key to Rein’s success was giving him the flexibility and encouragement to demonstrate his own free will with housing, employment and other important decisions. He has an amazing spirit and a desire to be a strong advocate for himself. He’s built the skills to make life choices that are in his best interest.”
During National Developmental Disabilities Awareness Month, we salute Rein for his determination and drive; as well as his courage and strength in being an advocate for himself and others. Programs and services for people with IDD have come a long way since the 1960s. However, there is much more work to be done. Through advocacy, and federal and state funding to support people with IDD, we can continue to improve the quality and expand the reach of these vital services. Together we can help ensure that everyone living with an IDD has the opportunity to live a productive and fulfilling life.
Allies, Inc. is a nonprofit agency dedicated to providing housing, healthcare, meaningful employment and recreational activities to people with special needs in the communities of their choice. To learn more, visit www.alliesnj.org.
“A world where limitation does not distinguish nor define.”
Contact: Nicole Zamerovsky, Director of Communications, Allies, Inc.
Cell: 609-508-6181
Email: nzamerovsky@alliesnj.org